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Tuesday, February 04, 2014

Although it is an absolute pleasure to have the opportunity to maintain this blog and to post about the REMARKABLE and INSPIRING stories of the clot survivors I come in contact with...but there is an underlying problem... and it is, unfortunately, the fact that I have to come across clot survivors... and even more unfortunate is that there is no shortage of them...For me it is truly a privilege to be a part of this community of individuals that, in some instances, come face to face with their own mortality and (thankfully) more often than not they can walk away from their clotting incident and start their very own come back story. From this platform I get to share with all of you the news of the troubles of the clotting incident but also the process of coming out of the "recovery maze" which can vary from person to person.I am thrilled to be doing this but at the same time I wish that I did not have to because then it would mean that we have no blood clotting incidents and no blood clotting disorders... But unfortunately that is not the reality and because of that I will continue to share the stories that come way so that the experiences of others can guide some out of their own recovery maze...The text that you will find below I received from an email early in January TIM PETERS a clot survivor who is searching and looking for the way out of his maze and I am more than happy to share his information for all to read... THANK YOU TIM FOR YOUR WILLINGNESS TO SHARE!

"While I know everyone recovers differently I am interested
in hearing from cyclist on the difficulties and advice for getting back on the
bike.Because I tested positive for
Factory Five Liden there is a good chance I will be on some type of thinner for
life a and there is the whole falling thing that has my wife concerned.

Right now fatigue is my biggest hurdle and going for a 1
mile walk is tiring.It is also winter
time in Chicago so it will probably be a few months before I am actually riding
outside, in the past I would ride most of the winter but it looks like me and
the trainer will be best friends once I get to that point.

Below is my story and a picture before the start of this
years Ore to Shore 48 mile mountain bike race in the Michigan UP.I raced mountain bikes competitively starting
in 1995 and stopped in 2007.The other
picture is from 2004 when raced for the regional Mountain Dew team. I got
burned out and took some time off. In 2011 I did a couple 40K TT's, in 2012 I
decided to get my head back into cycling and began riding with a group again.
In 2012 I also competed in my first mountain bike race in 5 years and did the
Master's 40 category Cyclecross Championshiprace in Chicago, while I got my doors dusted I didn't finish last.For 2013 my goal was 5 races; I made 4.

This is my story of a new chapter in my life, let's say it
is the beginning of chapter 3.

The Folly of the Clot -

Below is the story of my recent diagnoses of my first DVT/PE
event.I am a 49 year old husband and
father of two daughters, during my time on this great planet of ours I have had
10 surgeries, 3 from two separate head trauma injuries, 4 for defects to my
feet from having a disease called Charcot Marie Tooth and 3 other miscellaneous
procedures.As you can tell I have spent
my fare share of time in the ER and hospital beds.A good sense of humor I found was important
in getting through and recovering from these events.I also never let any of this stop me from
being highly active. In my youth I raced motocross and cross country
motorcycles and have been racing mountain bikes and cyclecross bicycles since
1995. I stopped the bicycle racing for a few years but this was my year back
and for the most part was going well until a few weeks ago.

My DVT/PE story starts with a phone call to my sister on
October 29, 2013 who just happens to be a doctor.With the usual catching up on things
conversation she also has a tendency to ask about any current injuries I might
have.Well I said to my sister I do, I
think I cracked a rib in a cyclecross race crash on October 19, and I have a
pulled muscle in my right calf for a month or more that just won't go away.She asked more questions and than told me in
her doctor voice to make an appointment with my physician the next day as a
precaution, she mentioned I should get checked for DVT. I know clots can be
serious as my aunt died of a PE in 2001.

So the next day I see my doctor and in less than a minute of
meeting with her I am being told to go for an ultrasound. Well my tech wasn't a
very good poker player and I could tell she could see something as her face
went from a smile to a blank expression every time she went over a certain
section of my leg.Sure enough clots
were found and I headed back to my doctors office.As soon as I arrived I was told to go to the
hospital as I needed a CT Scan of my lungs. I called work and told them I
wouldn't return and I would see them tomorrow, was I wrong on that one.

Once I got to the hospital I was quickly prepped for the CT
Scan, so after the scan I was asked to wait in an exam room with the IV port
still in my arm. Very quickly I got a visit from a nurse explaining I needed to
go to the ER immediately.Dressed in my
street clothes and the IV port in my arm I was hustled off to the ER admission
room. My first nurse left and the new nurse came in and quickly started with
the questions and told me I needed to be prepped for an IV, I said that wasn't
needed as I put one in before I left for work that morning and rolled up my
sleeve and showed her the IV port already in place.I thought she was going to fall off the chair
and quickly told her that I got it when they did my CT Scan. She gave a nervous
laugh and got me on the gurney.I was
brought into the cardiac room and soon two nurses were around me taking vitals
and drawing blood.Having been in this
scene before I noticed they all had that "he's gonna die" look in
their eyes as they went about their work very seriously.I stopped one of the nurses and I said what
is your name, she said Michelle.Michelle I said I am going to be ok you can smile, and with that the
mood in the room changed. After some light banter with the nurses and the
machines hooked up I was told the ER doc would be in to see me in a
second.

When the ER doc came in she started to explain that two
significant clots were found in my right leg and that I had multiple clots in
the lower lobes of both lungs, my condition was very serious and would be
ordering blood thinner injections immediately.With that I told her I would rather have a pizza, she chuckled and asked
me what I like on my pizza.My wife,
sister (not the doctor) and brother-inlaw soon showed up and I started filling
them in on the events of the day.After
4 or 5 hours in the ER I was wheeled up to the ICU floor for 3 glorious days of
observation, learning how to inject Lovenox in my stomach and twice daily blood
draws. Along the way I got to meet some
wonderful nurses who made my stay and early recovery the best they could.

It has been three weeks since being released, since than I
have had another full CT Scan, ultrasound, about 20 blood draws, and several
trips to my internist and the hematologist.I am now on 6mg of Warfarin daily and have an event monitor for the next
month as I have had some heart palpitations that can not be explained but most
likely caused by the stress and anxiety. I have also tested positive for Factor
Five Liden, this will most likely put me on thinners for the rest of my
life.

Like a lot of you, I have constant fatigue, bouts of
depression and anxiety and wonder how much my life will change over the next
several months.So why with all the bad
do I call my story the folly of the clot?Because for every bad thing that it has thrown at me there has been a
reason to smile, with every blood draw there has been someone trying make it
pain free, and while my buddies are out still racing and riding in the cold
Chicago fall I was able to walk around my entire neighborhood without stopping.
When next racing season comes around they better be afraid because I am going
to kick their butts.They laugh too when
I tell them that and with that they know I am ok. "

Thank you Tim's sister (the doctor) for providing the guidance needed to get Tim seen and saved from his clotting incident.

Well Tim certainly you can and WILL kick my butt any day on the bike. I know that you will be throwing down on two wheels as soon as this freezer time ends and we are all able to shed some layers. But the only layer you will have then will be your very own CLOT BUSTER STOPTHECLOT.org polka-dot jersey for sure. Here is hoping that we get to share a ride together someday!THANK YOU once more for your willingness to share your story. WONDERFUL to read the positive outlook you have which can indeed be a catalyst to keep you going. Over the fall and winter you walked... coming spring you will be riding again!Thanks for reading,The Clot Buster